Bruce Bonyhady AM, Chairman, National Disability Insurance Agency 23 October 2014 What is the Future of Respite in the NDIS? Presentation to the National Respite Association Shaping Our Future National Conference 1

Overview Sustaining informal care, building resilience and what you do are very important in the context of the NDIS. You are improving lives Four key NDIS features-NDIS Act, insurance not welfare, control and choice and core government business The journey so far Scheme sustainability Planning process – sustaining informal supports Looking ahead: Transition to full scheme The term ‘respite” and importance of language Conclusions

1. NDIS Act (2013) The NDIS is governed by an independent board and is set up under the NDIS Act (2013), which sets very clear objectives, and the CAC Act, which sets very clear obligations and duties for NDIS Directors. The Objects of the NDIS Act include: o Scheme sustainability o Insurance Scheme o Maximising independence and social and economic participation o Assisting Australia to meet its obligations under the UN Convention on the Rights of Persons with Disability The NDIS will absorb and eventually replace the National Disability Agreement and hence all existing State and Commonwealth funded disability services. Important part of transition which must be got right

2. The NDIS is insurance not welfare Prudential insurance governance cycle- comparison of forecasts and experience, leading to continuous improvement based on outcomes Minimising costs/ maximising opportunity over a lifetime, unlike the short term focus of welfare and so also better aligned to individual and family goals Undertake detailed data collection and analysis and invest in research Insurance companies as forces for social change Early intervention and investments, more generally, a key component – invest in family resilience and individual capacities

3. Choice and Control The NDIS will fund individuals/families not service providers. As a result at least 93% of NDIS expenditures will be contestable (Note: some of the administration costs are and will also be contestable) Power with individuals and families Very flexible nominee provisions in the Act to allow for impaired decision making capacity, which facilitates maximum participant control and choice Market place will lead to increased efficiency and innovation. Will require new information sources to inform choice. Technology is likely to play a major role This implies a huge structural adjustment for disability service providers and the culture of the sector

The NDIS is an exemplar of governments doing what people cannot do for themselves. It is core government business in an area of market failure There is no private insurance market, and any suggestions it will develop is fanciful –no affordable premium due to the absence of a sufficiently deep market to pool risks Total and permanent disability insurances are completely inadequate to meet the costs of significant and permanent disability –it only provides temporary cover for people who are employed or take out additional cover The Productivity Commission therefore concluded that the NDIS should be one of the first things that governments fund 6 4. NDIS is core government business

The NDIS is the Snowy Mountains Scheme of social policy. Extraordinarily smooth start to such a large and complex reform Four trial sites began on 1 July As at 30 June: o 8,585 eligible participants o 7,316 approved plans o Client satisfaction 1.66 on scale of -2 (very dissatisfied) to +2 (very satisfied) o Total costs $130.9 million against budget of $148.8 million o Average package costs $34,600 (excluding Stockton), which is less than expected average of $35,000 Three further trial sites began on 1 July 2014 Learn-build-learn-build The NDIS journey so far 7

To understand scheme sustainability, it is important to recognise the powerful demographic forces which have driven demand for the NDIS Scheme sustainability is the most important objective of the Board and has both financial and outcome dimensions Both require an investment in the informal care system Quality life is based on loving relationships, friendships and essential formal supports Family relationships and carers need to be nurtured and nourished and not burnt out. Respite has an important role in building resilience Building family resilience needs to be multi-faceted and multi-targeted, so ideally will provide rest and build capacity and extend beyond parents to siblings, extended family and micro-boards Scheme sustainability 8

The planning process takes account of what is reasonable for families to provide. Therefore, when considering respite, it should be considered in the context of the Agency Guideline, Sustaining Informal Support The Guideline states that "Through the planning and assessment conversation the delegate should establish the impact providing this informal support on the carer and their capacity to continue to provide this level support, now and for the duration of the planning period. This may, in some circumstances, need to be discussed in a separate conversation with carer“ Some people have suggested that care needs should be assessed separately. This would take the focus away from participants and under the NDIS Act, they are at the centre of the Scheme Carers can also complete a Carer Statement which captures the carers goals which impact on their informal care provisions and the sustainability of the informal care that they provide and can be reviewed at the same time as the participant's plan Respite is also a part of services which, since 1 July, have been bundled with personal care, community access and recreation and so is much more flexible now. As part of learning and building we would be interested in your feedback on how well our approach is working 9 Planning process – sustaining informal care

Will start on 1 July Massive transformation. New eco-system 1.Phasing. Fast as possible, consistent with sustainability but not everyone can enter at the start. Important to sustain informal care in this phase 2.Tier 2 is a critical scheme foundation 3.In kind services have limited choice so far and will not scale. But what, when, where is the role of block funding in full scheme? 4.Market design and readiness of providers and the workforce 5.The Agency will be a market facilitator. Diverse supply and retaining social capital will be critical to success 6.What is the future of respite? a)Participants, will become much better informed, will decide. So know your market and customers b)Know your strengths and costs and be ready to innovate c)Focus on what is core; do not do what is context 10 Looking ahead: Transition to full scheme

When the NDIS was established “respite” was seen to be hurtful by some people with disability This is understandable. The Oxford Dictionary defines respite as ‘interval of rest or relief’ and ‘give temporary relief from pain or care’ In preparing for this presentation I have held discussions with the Australian Federation of Disability Organisations, which has now acknowledged that the term "respite” is well understood and is ready to support its use by the NDIA The absence of an explicit reference to respite has caused anxiety, especially amongst older carers, but we also want, where appropriate, an emphasis on building independence and participation We will consult further as part of learn-build-learn-build and I encourage you to engage, too, noting language and unity are vital With more discussion, I am hopeful, “respite” should no longer be like Lord Valdemore, “The service which cannot be named” 11 The term “respite” and the importance of language

Thank you for what you do The NDIS is the legacy social and economic reform of our generation. Like the Snowy Mountains Scheme it is being built to last and for future generations The NDIS is insurance not welfare, based on control and choice and is core government business The NDIS has had a very strong start and the Agency is learning and building Nurturing and supporting families and carers in their roles and building their resilience are critical to Scheme sustainability, which is the top Board priority The planning process recognises the important role of families and carers, but consistent with the NDIS Act, participants are at its centre In transition and, I expect, beyond respite services will be important There is a mountain to climb over the next few years as the Scheme is fully rolled out across Australia. We would be delighted if you climb and work with us, so that the vision that the NDIS becomes a global leader is achieved 12 Conclusions

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